if only i knew what i was doing…

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Bad Day

I had my operation on 20th February but things are not over once and for all by a long shot. About a week after my operation I was released from hospital, knowing the surgeon had removed all of the tumours but hadn’t been able to remove all of the cancer cells. So I have that lingering at the back of my mind all of the time.

As if that wasn’t bad enough I’ve had post-op problems with my bladder in the shape of a fistula which means I now have nephrostomy tubes connected to my kidneys to get rid of the urine. I went into hospital with a massively high fever and two weeks later I’m out again and home, but still trying to get to grips with my new life. I have a wheelchair downstairs because I’m too weak to walk very far, and I have bags of urine strapped to my legs making it difficult to wear ANYTHING I own outside of the house.

I’m trying not to be miserable. I’m still here, I keep being told. I should look at each day as a gift. But it’s hard. very hard. To walk into a hospital with no pain and no medical appendages and to be wheeled out five weeks later feeling a fraction of the person you were.

I’m off to Devon for a few days after the weekend. I’m hoping it’s sunny so I can get away with maxi-dresses to camouflage the bags. I’m hoping a few days away from home with the family will put things back into perspective for me again. I really do want to feel better.

I’ve been in two minds over whether to knock this blog on the head. Or have a hiatus for a while. Or to make the opposite decision to write more frequently so I might write about different things. It’s not what I set out for it to be at all, and when I read it back I guess my life doesn’t sound like much fun. And my posts of late are just updates on where I’m at with my treatment. I’m tired of writing about cancer. Especially when I feel healthy. I feel fine right now. I have no pains, I’m living a normal-as-possible life. I don’t look or feel like someone who has cancer anymore. I do though. So how do I keep it off here, when that little fact of my life is there, in the background, all of the time?

You get to choose one superpower. Pick one of these, and explain your choice: •the ability to speak and understand any language •the ability to travel through time •the ability to make any two people agree with each other

Rachel Summers

I’ve always been fascinated with time travel. I always wondered how far I would go back if I could. And whether, if you could travel back, would it have to be within your own lifetime, or could you go back to any time, and any place. And how things would be when you got back; would things have changed.

I used to wish for time travel. I used to daydream about all the things I could say or do differently to make my life better. Of all the things I could fix with hindsight – all the ways I could be cooler, if I knew what I was doing earlier. How I could wear the coolest clothes before anyone else, be into the coolest bands. Appreciate the way I looked. Save more money. Study harder. Buy cheap shares in Apple. All in a kind of ‘Being Erica’ style. But after I gave birth to my son I couldn’t daydream about it so well anymore, because realistically, any change in the past could affect having him, or him being the exact person he is, and I couldn’t bear that idea.

Now, I would definitely say ‘Yes’ to the time travel. I wouldn’t need to be able go back so far. I’d just need to go back a few years. To when I started to get the strange pains. Before the tiredness. Before the blood. I’d go back and make sure I was heard. Fuck it, I’d even make up symptoms to make them do the MRI sooner. Catch the tumour in the early days when it could have been a minor operation preserving my fertility. Instead of being the incurable mess it is today.

If I went back two, maybe three years, it would only change my life expectancy. I’d still have my husband, I’d still have my son. The same job, the same friends. I’d even have had the same insurance payout – though actually, with hindsight I’d probably have changed that – raised the amounts, had more policies so we’d be better off. I’d be healthy now. I’d have hit my two years in remission. I might even have had another child by now or at the very least still have the ability to have children. I might not even have had to go back to work. I could have started this whole hoop palaver years earlier and be a whizz at Etsy.

If I had the ability to go back in time, I could give my four year old boy a future with a mother in it.

With all the radiation I’ve had the past twelve months, if comic books are to be believed, I should already have some super-powers. So who knows – maybe one day I might be able to.

At the moment, I’m living a life of two halves: One that is Normal, and one that is Real.

In my Normal life this week, I got my son ready for his first day back at school; tried on uniforms, turned up trousers, ironed polo shirts. There wasn’t a lot I could do with the jumpers – the smallest size the school has is still ever so big on my four-year-old.

He started back on Tuesday, so I finally had some time to myself. I bought some more hoops and some Xmas material online. I plan to make a bunch of decorations – all of the magazines have Xmas things in at the moment – and try to sell them. Okay, so this still revolves around me getting my Etsy shop set up and fast – I’ve roped my husband in on this now, possibly my brother-in-law too. But I guess I may as well try and get started on this sooner rather than later. I’ll have a lot of time off during the day to make things, and once I get started I think I’ll be on a roll.

I also bought some black cotton bags – I’ve almost finished sewing up one of them – the prototype I guess – and when it’s done I’ll post photos.

I had a great Date Night with The Mister and enjoyed a lovely meal.

And I’ve watched Brewster’s Millions on TV twice. I love it, and I watch it every time it’s on.

My Normal life has been quite chilled.

In my Real life this week, I mostly waited.

I waited for four hours at The Christie to be told I wasn’t well enough to have my Chemo this week. My white blood cell count was too low for it to go ahead. I have to have my bloods done next week instead – which happens to be the same day we have to go to Birmingham for my appointment with the surgeon I was told to ask to be referred to. I’ll have to have my bloods done, see the nurse again to see if I get the green light to have chemo the following morning – and then make the two-hour drive for my first consultant appointment.

I’m trying not to get too optimistic about it, not least because I saw another surgeon the day after being refused chemo, where after waiting for three hours we were told he wasn’t keen on doing the operation either because it would involve a full pelvic exenteration in order to get to the node that is affected.

So In my real life, I’m waiting again, knowing that the change in Chemo dates affects every other date we have put in the calendar because everything has been planned as to how well I’ll feel. Now it’s all messed up: the party we were going to go to is now going to be two days post chemo; the wedding on the 20th only a week or so after as opposed to two.

I have this one last chance lined up for next week: this super-surgeon who does a lot of laparoscopic work, and who may be able to remove this node without taking away healthy organs.

Today was results day from my mid-point MRI. It could have gone better, but all in all I think the results were good. After an hour wait past my appointment time I went through to a side room, and was told that my cervical tumour had shrunk, that it was responding well to treatment. Which is good. But then I was told that the surgeon still isn’t willing to give me the operation which will mean I am cured. Which is bad.

The problem is my lymph node. Every time it’s brought up, I get different, conflicting information.

The first time it was brought up was after my PET\CT. No one really brought it up but it was there hanging about in the background. It was the reason I was passed from pillar to post and no one could give me a straight answer. Then it disappeared, it was okay. And then a week before my scheduled operation it reared it’s ugly head again and my operation was cancelled and I started chemo instead.

Today, I was told that the enlarged lymph node had always been enlarged; it was on the scan from when I was first diagnosed in October, and I was told that it was an anomaly – it hadn’t changed in size the whole time. This was the reason I couldn’t have the operation – they didn’t know what it was doing, they weren’t sure if it was cancerous as it should have been affected by the chemo. They also couldn’t get anyone to agree to try a biopsy on it to see if it was cancerous or just enlarged – there was just the evidence from the PET\CT. I was told to consider it static, that if it hadn’t changed then it was probably nothing to worry about right now.

I went home upset as you would expect, wanting answers that no one could give me.

When I got home I phoned and asked if I could at least have the measurements of the tumour so I could think about it in a real sense; when my Dr got back to me, she’d had another look over my charts, and realised that the node had changed size over the course of the treatment. It had started off 0.8cm in October, grown to 1.1cm by April/May, and after three cycles of chemo it was now 0.6cm. This is both good and bad; it is changing, so it is cancerous – but it is responding to treatment and has shrunk by almost half over the three cycles.

I’m hoping that it will shrink further. I’m hoping that even though it is in an awkward place, that if it shrinks further my surgeon will agree to give me the hysterectomy and take out the lymph nodes, take out the cancer, and ‘cure’ me.

It started going wrong when they hooked me up to my second round of Taxol. Ten minutes later, I felt odd. my tongue and lips felt prickled, and I felt flushed. I told Chris that I felt funny and he looked up from the internet and confirmed I had red blotches creeping up my neck and my face. I pressed the nurse button, and Chris rushed out to get someone, and in a few seconds I was surrounded by nurses pulling the Taxol drip, pulling blood from my arm, pushing hydrocortisone into me and setting up a flush to dissipate what Taxol may have been in my system. I didn’t tell them that what I’d really been worried about was that it had felt like someone was sitting on my chest. That went away pretty much as soon as they stopped the drip. I didn’t realise it at the time, but that was the start of my heart giving up, and I could have died.

So no more Taxol for me.

Because of how late in the day it was, and the lack of consultant staff in the hospital, I was sent home full of steroids and tears, wondering where this would leave me. Where this would leave my tumour. Where this would leave my future. It wasn’t a good day.

They called me back in the following day to have the Carboplatin part, only an hour’s worth but better than nothing, I figured, and I left quite positive. But now, a couple of weeks later, I’m not so sure.

I have to go back in on the 24th for chemo again but it will only be the Carboplatin part. And while again, I’m happy to be getting Something, it’s still not what I was supposed to have, not the planned course, not what supposed to cure me. And it’s really hard to be positive about it. What if half the medicine means half the job?

I have another scan booked in for the 30th. I can’t wait for it. Even though it will mean I have the wait for the results of it too. The scan will determine the next step. Whether I have an operation in the next month or so, or more chemotherapy. I’m definitely not ready to lie down and let this thing take me yet, so they better have something else up their sleeves.

I’m annoyed at my body. First for letting the Cancer spread, leaving me needing this treatment, but more for deciding it’s allergic to the thing that would fix me. On the second go, instead of the first. When the damage has already been done, and my hair has already fallen out. If it had happened on the first go I’d still have my hair. It feels like a cruel trick.

It was my pre-op yesterday. Well, it was supposed to be. Except my results went through another MDT this week after my surgeon looked at my PET CT scan results for a second time and realised that the thing he could feel invading my bladder isn’t the original tumour – it’s an enlarged lymph node, where the cancer has spread. And so I’m not having the operation. Not yet anyway. I have to have more chemo. Six cycles, three weeks apart. And this time it’s. It’s not the ‘easy’ kind. It’s the real deal hardcore kind. The kind that is going to make me feel really poorly. The kind that will make my hair fall out. The kind that will finally have me singled out in the real world outside of The Christie because I’ll ‘look’ like I have cancer as well as feel shitty inside.

I feel utterly sad. Scared too, I guess. But mostly sad and disappointed because I thought I was near the end of this. I thought all of this would be over after the operation in three weeks’ time. And just as soon as I resign myself to the operation not being as bad as I think, as it being a means to an end – I’m put right back where I started again.

I’ve grieved for all of this before. In October I was told, first that I would be having an operation; then that I was having to have chemo. I grieved the loss of my hair before I’d even had my first appointment. I stopped straightening it to detach myself from it. I joked about how I wouldn’t be having any more ‘bad hair days’ and that I could technically do my hair before I went to bed each day. About how I’d be the fastest in the shower. About how I could get loads of different wigs and decide on a daily basis who I was going to be. And then I was told I’d be getting Cisplatin, that my hair wasn’t going to fall out, and it seemed like a reprieve; too good to be true. And I guess it was, because Cisplatin didn’t finish the job and now I’m back here again, having the operation pulled out from in front of me again and this time being told I’m having Carbo-Taxol (the Taxol part is the part that will make my hair fall out).

I know it’s a means to an end, that this will stop the cancer spreading. Well, actually, I don’t ‘know’ that, again it’s blind faith in The Christie. But I would be lying if I said it didn’t matter about my stupid hair. I’m already thinking of my plan of action. My hair is pretty damn long so after the first infusion, when the Taxol has definitely gone in, I’m going to get it cut shorter. And then when it properly sets in, I’m going to get the clippers out and sort it myself. I just think letting it fall out all over the house would a) be too traumatic and b) make far too much of a mess.

Another hard part of getting this news is the fact that I now have to tell everyone that I’m not having the operation and that I’m not going to be cancer free for a while longer.